What are "the 'necessary conditions' for promoting inclusion" (DfEE, 1997, p.7) and how do these relate to parents experiences? in this paper I will attempt to identify the ways in which parents of children with learning difficulties or disabilities have ensured integration, or inclusion and resisted segregation or exclusion. Firstly, the difficulties in establishing a 'partnership' relationship between parents and professionals is discussed in relation to the lack of power parents have to make choices for inclusion. Secondly, I will consider how in the past compulsory segregation was opposed by parents of children who were instructed to be taken away for educational reasons, against the will of their parents. Thirdly, I consider how parents of young people with Down's Syndrome who have been included into mainstream secondary schools around the country have overcome barriers to inclusion.
Understanding Parents' Perspectives
Parents' demands for inclusion have been recognised by parent groups which have developed around England since the 1981 Education Act. These groups support parents and lobby for the right of children and young people who experience difficulties in learning or have disabilities to be educated in mainstream schools. Under the 1981, 1993, and the 1996 Education Acts, parents of pupils categorised as having a statement of their 'special educational needs' (estimated to be almost 3% of pupils, DfEE, 1998) have the right to 'make representations, and submit written evidence' (DES, 1981, Section 5.3., DfE, 1993, Section 167, DfEE, 1996, Section 323). However, these parents may find that their views may be disregarded and not respected when they want their child to attend a mainstream school.
Parents can defend and present their case for inclusion. If parents are expected to have choice then they must have the knowledge of education and the education system that they need in order to make intelligent choices and once they have the knowledge it should then be possible to put their choices into practice. Parents of children who experience difficulties in learning or have a disability are often unprepared and their choices are often opposed. They are sometimes caught in a catch 22 situation where their opposition to the views of particular professionals is seen to be evidence of their lack of knowledge of education or their inability as parents.
Under the 1981, 1993 and the 1996 Education Acts professionals are given more power than parents to decide how a child or young person categorised as having 'special educational needs' is educated. Ultimately professionals have the power to recommend that pupils attend special schools against the wishes of their parents. Professionals are considered to have the expertise and knowledge to decide which is the most appropriate school to meet the child or young person's 'needs'. For the pupils who have statements of their special educational needs the professionals decide what the most efficient education is for these pupils, that does not detrimentally affect other children. 'Escape Clauses' written into the 1981, 1993 and 1996 Education Acts give professionals the power to exclude pupils against the wishes of their parents. Local authorities have to provide efficient instruction for a child, within the bounds of what is considered to be reasonable public expenditure (1996 Education Act, Section 316).
Parent partnership, involvement and the rhetoric of choice
The notion of 'partnership' in the Warnock Report (1978) assumes that parents do not have sufficient information, that they may not accept their child's disability or learning difficulty and that professionals know best. Parents are assumed to take on a particular role and have a particular attitude towards their child. The notion of partnership embodied in the Warnock Report (1978) aimed to encourage parents to participate in decisions about their child's perceived 'special educational needs'. The moves in the '70s and '80s to encourage parents to be involved in decisions about their child was a recognition of the importance of parental support and understanding of their child's education. However, the notion of 'partnership' failed to address the unequal balance of power between parents and professionals. In a 'partnership relationship' professionals, not parents, have the power to define and categorise pupils as having 'special educational needs'.
Categorising 'special' children
The categorisation of pupils persists. Pupils are grouped according to whether they are considered to have 'severe' or 'moderate learning difficulties', 'hearing impairment', 'visual difficulties', 'language disorders', 'autism'; alongside other terms. These children go through an assessment procedure which specifies their developmental level - what the child can and can't do according to professionals who administer the education system. Despite changes in the labels over the last one hundred years, the 'objective' assessment of children persists. These judgments have shifted over time; moving from the ineducability of children assessed to have an intelligence quotient of less than 50, to their educability in the 1970s and categorisation as having 'severe learning difficulties'. Prejudices have consequences in education; because a child with Down's Syndrome looks different, assumptions are made about their learning ability and how and where they should be educated - usually in special schools (Booth, 1985). Sally Tomlinson (1982) suggests that the concept of 'need' may not be based on what is best educationally for the child and is subject to a variety of influences. Defining children as 'special' has been shrouded by a multi-disciplinary professional mystique of 'objective' reports:
Needs are relative, historically, socially and politically. The important point is that some groups have the power to define the needs of others, and to decide what provision shall be made for these predetermined needs. The unproblematic acceptance of 'special need' in education rests upon the acceptance that there are foolproof assessment processes which will correctly diagnose and define the needs of children. But the rhetoric of special needs may have become more of a rationalisation by which people who have power to define and shape the system of special education and who have vested interests in the assessment of, and provision of, more and more children as special, maintain their influence and interest. The rhetoric of special needs may be humanitarian, the practice is control and vested interests.
(Tomlinson, 1982, p. 75 )
The Warnock Report (1978) recommended the changing of specific labels of 'severe' and 'moderate learning difficulties' to 'special educational needs'. The 1981 Education Act sanctioned this all-encompassing term for pupils identified as having 'special educational needs'.
A group of professionals identify the child's learning 'needs' to produce a statement. This document, outlining the child's 'special educational needs', can involve a contribution from the parents if they are asked to outline their perception of their child's 'needs'. The statement, on the one hand may protect the child's right to provision and was intended to take the parents' view into account; providing an important document for the child, the parents and the professionals. On the other hand it has been criticised for not achieving these objectives. The procedure has been intensely criticised for not respecting parents' views (Swann, 1987). As Simmons (1997) notes, since the 1993 Education Act and the establishment of the Code of Practice on the Assessment and Identification of Special Educational Needs (DfEE, 1994) parents can turn to the Special Educational Needs Tribunal when partnership had failed. In particular she suggests that professionals are limited in their ability to 'speak freely' and to present written evidence at tribunal hearings, and as a result a true 'partnership' relationship between parents and professionals is undermined (Simmons, 1997).
Restrictions on choice
Parents' freedom to choose the education they want for their child is restricted by the compulsion for pupils to attend school and the practice of compulsory segregation. Parental choice is limited by what is available in an education system structured on values of academic achievement, distance, wealth and segregation.
Mass education originally applied to all pupils, apart from the 'permanently disabled' (Cole, 1989). However, it was not long before policies emerged to deal with pupils who did not fit into the system. As pupils were required to take examinations and as teachers were paid by results the incentive of schools and teachers to include pupils who experienced difficulties in learning or had disabilities was reduced (Cole, 1989). As pressures were placed on teachers to exclude pupils, there was growing recognition of specialist teachers. Pupils began to attend voluntary special institutions established all over the country. The emerging policies which dealt with pupils categorised as deaf, blind, epileptic and feeble-minded overrode the 1870 Education Act for all pupils who were educated in board schools, independent schools or at home.
The state took over many charitably run institutions for pupils categorised as deaf, blind, feeble minded and epileptic and expanded this provision when they were given the powers to do so. In 1900 it was written that:
The decision of the Education Department is final as to whether a child may be retained in a special school or class as defective.
(Committee of Council on Education, 1900, p. 41)
Doctors and teachers decided whether a child was able to be educated in an ordinary school not the parent. Alongside the expansion of compulsory segregation there appears to be dissension by the parents of these pupils who were forced to attend special boarding schools 'in the country' far away from the family home. The 1900 Committee of Council on Education allowed parents to make claims to have their child examined as fit to attend ordinary class in elementary school. By 1914 the report from the Standing Committee on the Elementary Education (Defective and Epileptic) Bill acknowledged the 'consultation of parents' and the payment of parents expenses and costs incurred if a court order was not made. This indicates that the decision of parents of 'defective and epileptic' children was upheld above that of the Education Department which then had to pay expenses to the parents.
Objections to segregation
Parents were not satisfied with their children being taken away. They were not in agreement with the decisions of the Education Department to segregate their children, yet they were having court orders placed on them to do so. The General Report on schools for the Blind and Deaf mentions the: "difficulties in bringing children to the schools which provide the special education they need...." and that : "the special treatment of children involves their removal from their homes" which occured alongside: "the unwillingness of parents to part with the children" (Committee of Council on Education, 1900 p. 3).
The policy and practice of compulsory segregation of pupils was perceived as a humanitarian gesture by educators and philanthropists who wanted to prove that these children were not 'imbeciles' but were children capable of being 'clean and neatly dressed .... and able and anxious to communicate with [their] neighbours' (Committee of Council on Education, 1900, p. 2 ). A report in 1900 on Schools for the Blind and the Deaf reveres the work of the head teacher Mr Buckle and illustrates how remarkable this man's humanitarian devotion was considered to be:
He was possessed of exceptional talents and accomplishments, and he devoted himself entirely to the service of the blind; he was a true philanthropist, whose zeal and affection for his pupils were always ruled by sterling good sense. His whole life, indeed, was an example how a man should do his duty in that station to which it has pleased God to call him.
(Committee of Council on Education, 1900, p. 4)
Parallel to the development of ordinary schools occurred the establishment of special schools. The authorities, not the parents, decided who attended the special schools. There was no choice for parents who were deemed unable to participate in the decision-making of the authorities who had the powers to identify, categorise and segregate pupils, backed by the law courts. Specialist instruction was considered necessary for these pupils, based on the medical decisions rather than social reasons of letting that child remain within their family and the community.
The foundations formed by compulsory segregation represent a legacy onto which parental-choice policy has been superimposed. Booth (1981) charts the increase in segregation of pupils over twenty-five years, from 1950 to 1977. The 1970 educability law and the support of education authorities for a segregated system of special education are considered to be key factors responsible for the increase in segregated education.
Parents are disempowered on a number of levels: the instigation of the statementing process; understanding what the process is and how to participate; participating in the process itself and knowing how to present a case; and the outcome or the final statement. The relationship between parents and professionals is vital to this process and the final outcome. Professionals have the information for parents and they are also familiar with the process. Parents may also have information, but this may not be enough for parents to get what they want.
Official Challenges to the System - overcoming barriers to inclusion
Despite the rhetoric of choice providing access for all in the realms of state education, or education for those who 'choose' not to pay for their schooling the balance of power ultimately rests in the hands of the professional decision makers. Parents are subjected to the practice of special education which may be criticised as currently:
1. individualising the struggles of parents.
2. holding the balance
of power in favour of professionals (Booth 1988)
3.based on a deficit view
of disability (Goodey, 1992, Rieser and Mason, 1990).
Parents have not found the 1981 Education Act enabling (Wolfendale, 1989) and the response by some parents has been to form parent pressure groups. The London based group Parents for Inclusion supported by The Alliance for Inclusive Education, that has a disability rights perspective. Despite PFI's recognition as a legitimate training organisation for parents - which has been supported by the Department for Education and Employment, one of the groups key members has only recently secured a mainstream education for her child after a lengthy 'battle'. The mainstream secondary school that Zara had named on her statement was not welcoming and eventually a school has been found where the building will be adapted for wheelchair access (Parents for Inclusion Newsletter, Spring 2000). This school has already proved itself to be a 'welcoming' school by learning how to support the inclusion of Sophia who has recently taken her A level in Art - Sophia has Down's Syndrome. Sophia was included in her mainstream school due to the insistence of her parents and when secondary transfer was pending the authority suggested that she might be 'better suited' for a special school. Sophia's transfer to secondary school has been documented in a report entitled 'Rhyme or Reason ? The inclusion of young people with Down's Syndrome in mainstream secondary schools' (Booth and Paige-Smith, 1996). The secondary school experiences of six young people with Down's Syndrome included into mainstream secondary schools were explored, observations were carried out at the schools and interviews conducted with parents, teachers and the young people. Three pupils were in year seven, two were in year eight, one in year nine and another in year eleven.
Some of the barriers to inclusion that the parents experienced were:
* the headteachers attitudes - 'you have to have them on your side to
make it work' (p,21)
*pedagogy (how do we do it)
*resources - support
for the pupil - learning support assistant/teacher
The experiences and views of the parents were:
*a recognition of a sense of the rights of their children - the parents
had asked for inclusion or had transferred from special schools into mainstream
*some parents had searched for secondary schools that would accept their
child - parents met with senior teachers prior to application for entry
*some of the parents were involved in the issues of inclusion at the school
and the voluntary organisation level
*some of the parents were teachers or
professionals who 'knew about education'
*that they found headteachers who
were 'committed' to inclusion/integration
*the LEA provided the
support/resources for inclusion
*the high levels of support from the LSA's
- parents had ensured their statements were specific and quantified.
By overcoming barriers to inclusion these parents have been successful in their demand to educate their child with a statement of 'special educational needs' in mainstream school. Perhaps the recognition of the achievements of the inclusion of these pupils could be considered to be 'instructive' or good practice: how are these pupils accepted; do they have friends; do they obtain certificates and qualifications; do they have equal opportunities with their peers?
Marsha Forest a co-founder of the centre for inclusive education and community in Canada wrote that 'The criteria for full inclusion is "breathing" i.e. life itself' (p.14). This criteria was implemented in two school systems in Canada where the stated goal and philosophy is that 'each belongs' (Forest, M. 1992 p.14). A recent report from the East of England regional Co-ordination Project (SEN) (2000) set up as a result of the recommendation of the DfEE Action Plan 'Meeting Special Educational Needs' (1988, p.33) contains a recommended list of: Key Priorities to Support Inclusion and a Regional Policy Statement on Inclusion that has been agreed across the 10 LEAs who form the Eastern Region. This states that 'all children and young people should experience equality of opportunity and regard and be educated at their local mainstream school. Inclusive education is education that provides all children and young people with full participation in the curriculum and social life of their local mainstream schools' (Appendix 6, page 1). The Eastern Region is currently conducting a survey on 'good practice' for inclusive education across the region and a local and national pro-inclusion parent group is involved in this process.
The DfEE has also distributed the 'Index for Inclusion' (Booth et al, 2000) that identifies ways in which schools can 'engage in a critical examination of what can be done to increase the learning and participation of the diversity of students within the school and its locality' (Booth, et al, 2000, p.12). The acceptance and support for the principle of inclusion at local and central government level, as well as school level should be re-assuring. However, despite policy commitments that have emerged in the late 1990's to support inclusion, parental participation could be considered to be a 'necessary condition' that is required to overcome barriers to inclusion. Concern over the draft SEN and Disability rights in Education Bill has been expressed by the parent support and campaign group Parents for Inclusion, who want all disabled children to have Civil Rights to go to ordinary schools (PI, 2000).
REFERENCES
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